Very mild or prodromal ME/CFS

Yes, I’ve also heard that for some, but at the same time there are also people like this.
This is a good point and made me collect my thoughts a little.

I would actually say, for those of us with a prodrome phase, step count may be one of the last things to crash? To be fair, I wasn't running marathons, but like @DHagen and @V.R.T. (if I'm remembering correctly), I *was* trying to jog my way out of it right up until I was properly disabled.

My sense is the prodrome phase involves a lot of feeling ill/awful, not responding normally to exercise, plus cognitive, brain fog and/or mood problems (not to mention various gut and other 'autonomic' things seemingly going a bit haywire). And yet at this point you are still trying to maintain a normal lifestyle with all the walking and exercise that entails.

One of the things that appeals to me about the neurological angle is that it does seem flexible enough for there to be a common process among all these different onset patterns.
 
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and @V.R.T. (if I'm remembering correctly), I *was* trying to jog my way out of it right up until I was properly disable
Actually i didnt do much exercise at all during my prodromal phase. I tried to jog my way back into health 3 and a half years into mild MECFS after being gaslit by doctors.


My sense is the prodrome phase involves a lot of feeling ill/awful, not responding normally to exercise, plus cognitive, brain fog and/or mood problems (not to mention various gut and other 'autonomic' things seemingly going a bit haywire).
This is about right though. No PEM to speak of (at least not that I could be certain of) but something wasn't right.
 
I would actually say, for those of us with a prodrome phase, step count may be one of the last things to crash? To be fair, I wasn't running marathons, but like @DHagen and @V.R.T. (if I'm remembering correctly), I *was* trying to jog my way out of it right up until I was properly disabled.

My sense is the prodrome phase involves a lot of feeling ill/awful, not responding normally to exercise, plus cognitive, brain fog and/or mood problems (not to mention various gut and other 'autonomic' things seemingly going a bit haywire). And yet at this point you are still trying to maintain a normal lifestyle with all the walking and exercise that entails.
This pretty well describes it for me. I would also add that one aspect of the attempt to "jog" one's way out of things in my case was that, for a very long while, the jogging or walking itself really didn't seem to be a problem - in the moment, it was an effective distraction from everything else that was going on. That is to say, when I couldn't think at all I could just walk, which, for a while, had something like a meditative effect.

Obvious PEM was a late arrival.
 
This pretty well describes it for me. I would also add that one aspect of the attempt to "jog" one's way out of things in my case was that, for a very long while, the jogging or walking itself really didn't seem to be a problem - in the moment, it was an effective distraction from everything else that was going on. That is to say, when I couldn't think at all I could just walk, which, for a while, had something like a meditative effect.

Obvious PEM was a late arrival.
I also ran until I was practically bedridden. I was doing brisk walking towards the end. It lasted three years.

The prodromal phase was strange, characterized by small fiber neuropathy, intense fatigue after cognitive exertion, and oddly, less physical fatigue at the beginning.
Then came the second trigger, the same one (alcohol and tramadol), and a strange phase of increased physical fatigue with panic attacks (amygdal hyperexcitability) after exertion, and sometimes a sensation of my head exploding while jogging. But I kept going.

In short, yes, as Paolo said, I had a warning sign in 2016, a long time before, with very strange fatigue for a week... again after alcohol. Then I started getting sick more often with intestinal problems (irritable bowel syndrome, gastroenteritis) and recurring genital warts. My cholesterol has increased... it was long time before prodomic phase.
This corroborates a lot of what Paolo said.
 
Like most, I didn't know my first symptoms were symptoms. Hindsight granted me that insight.

My very first was a balance issue that affected my drive to work. And driving at night. I say "balance" because I cannot think of a better word. Equilibrium?

Then came the issues with writing and reading and comprehension, sleep, weakness....all very gradual, but inexorably worsening.

Even PEM was a lightbulb-on moment which I had to read about before I recognized it.
 
Yes, I’ve also heard that for some, but at the same time there are also people like this.

We’d have to be able to explain both.

What would be degenerating? We haven’t found it yet at least.
I absolutely feel that mine started years before. But I also was running regular 10k, working, studying at night, travelling the world and considering whether to try and do a marathon when I became ill. Not long before I won a prize for most regular attendance at my gym. I had also been struggling with getting more frequent colds/bugs, every few months I’d feel like I was hit by a virus…sound familiar?
 
I've been talking with patients for many years and I got the impression that some aspects of the disease were present before the onset of the catastrophic presentation of ME/CFS. But I may be completely wrong.

Could there be a degenerative process that started long before the onset? I don't know. All speculations.

I think you are onto something here. There are countless reports of ME being triggered by "straw that broke the camel's back" type onset when the patient looks back in hindsight at their medical history pre-ME. In my case in the years before getting ME I a few 1-2 week lasting ME spells that just simply came and went away and I recovered back to normal. Had no idea what they were at the time. Also in the year or so before getting ME I had some troubling symptoms that came and went. Then I suddenly got a terrible flu during a time in my life when there was a lot of major changes and stress both good and bad and bam that finally triggered ME for good.
 
I think you are onto something here. There are countless reports of ME being triggered by "straw that broke the camel's back" type onset when the patient looks back in hindsight at their medical history pre-ME. In my case in the years before getting ME I a few 1-2 week lasting ME spells that just simply came and went away and I recovered back to normal. Had no idea what they were at the time. Also in the year or so before getting ME I had some troubling symptoms that came and went. Then I suddenly got a terrible flu during a time in my life when there was a lot of major changes and stress both good and bad and bam that finally triggered ME for good.

I find it hard to understand how this could be a degenerative disease. If it were, there would be no coming and going such as in your case -and a lot of others including myself- I agree that there are signs for many patients that something was not quite right before getting ME/CFS.

Another hypothesis is this of "compensated functioning". Our bodies were compensating until a stressor (which is not always a virus) comes in and disrupts this compensatory functioning. Then our bodies fall into a neuro-immuno-metabolic (?) vicious circle that needs to be broken.
 
I find it hard to understand how this could be a degenerative disease. If it were, there would be no coming and going such as in your case -and a lot of others including myself- I agree that there are signs for many patients that something was not quite right before getting ME/CFS.

Another hypothesis is this of "compensated functioning". Our bodies were compensating until a stressor (which is not always a virus) comes in and disrupts this compensatory functioning. Then our bodies fall into a neuro-immuno-metabolic (?) vicious circle that needs to be broken.
It might not be degenerative by any standard definition, but some threshold of insults is eventually met and that puts our body and brain into an pathogenic state that is really hard to recover from
 
I think you are onto something here. There are countless reports of ME being triggered by "straw that broke the camel's back" type onset when the patient looks back in hindsight at their medical history pre-ME. In my case in the years before getting ME I a few 1-2 week lasting ME spells that just simply came and went away and I recovered back to normal. Had no idea what they were at the time. Also in the year or so before getting ME I had some troubling symptoms that came and went. Then I suddenly got a terrible flu during a time in my life when there was a lot of major changes and stress both good and bad and bam that finally triggered ME for good.
I was thinking of starting a new thread to discuss our prodromal phases as I believe it is very interesting, but it seems there already is one.

Should we move our discussions of this to this thread Very mild or prodromal ME/CFS? Someone more experienced than me can decide and move posts if necessary.
 
Hi, I've been following this thread and I think this really could be a major breakthrough for our understanding of ME/CFS. Very exciting! :)

I've also been thinking about the connection with Parkinson's disease and I recalled that Parkinson's prodromal phase can involve specific personality changes (obsessive-compulsive personality-like traits) in about 50% of patients.

This might be controversial and perhaps not extremely well-substantiated, but some evidence suggests that OCPD is the most overrepresented personality disorder in ME/CFS patients.

Also, OCPD is highly heritable (estimated to be as high as 0.78!) and can be associated with frontal lobe or basal ganglia dysfunction.

So perhaps this could tie back to what some of you already mentioned in this thread - that there may have been subtle neurological or behavioral differences present long before the formal development of full-blown ME/CFS.

I wonder whether OCPD-like traits could sometimes reflect the same underlying frontostriatal vulnerabilities that later contribute to ME/CFS development.
 
Hi, I've been following this thread and I think this really could be a major breakthrough for our understanding of ME/CFS. Very exciting! :)

I've also been thinking about the connection with Parkinson's disease and I recalled that Parkinson's prodromal phase can involve specific personality changes (obsessive-compulsive personality-like traits) in about 50% of patients.

This might be controversial and perhaps not extremely well-substantiated, but some evidence suggests that OCPD is the most overrepresented personality disorder in ME/CFS patients.

Also, OCPD is highly heritable (estimated to be as high as 0.78!) and can be associated with frontal lobe or basal ganglia dysfunction.

So perhaps this could tie back to what some of you already mentioned in this thread - that there may have been subtle neurological or behavioral differences present long before the formal development of full-blown ME/CFS.

I wonder whether OCPD-like traits could sometimes reflect the same underlying frontostriatal vulnerabilities that later contribute to ME/CFS development.
I've had OCD since childhood. Then came obsessive/addictive behavior. For the past 12 years, I've had uncontrollable temper tantrums...
 
I've been talking with patients for many years and I got the impression that some aspects of the disease were present before the onset of the catastrophic presentation of ME/CFS. But I may be completely wrong.

Could there be a degenerative process that started long before the onset? I don't know. All speculations.

I feel like many of the young patients that got ME from a Covid infection would say that this is not true for them. Maybe this a difference for the two age peaks? Also just speculating.
 
Hi and welcome!
This might be controversial and perhaps not extremely well-substantiated, but some evidence suggests that OCPD is the most overrepresented personality disorder in ME/CFS patients.
I don’t think we can get any reliable data on anything related to «personalities». The concept is so inherently flawed that it’s practically useless and the questionnaire or criteria used suffer from the usual flaws.
So perhaps this could tie back to what some of you already mentioned in this thread - that there may have been subtle neurological or behavioral differences present long before the formal development of full-blown ME/CFS.
We know that subtle neuropsychiatric symptoms are present early on in MS, HD, PD, and AD - pretty much all neurodegenerative diseases. But I’m assuming that’s not what you’re talking about because ME/CFS isn’t progressive.

It might be that the genes that predispose you to get ME/CFS also make you more likely to have certain neuropsychiatric symptoms. I don’t know if ME/CFS has been compared to OCD yet? The analysis in this paper placed ME/CFS outside to psychiatric group.
 
  • Hi and welcome!
    It might be that the genes that predispose you to get ME/CFS also make you more likely to have certain neuropsychiatric symptoms. I don’t know if ME/CFS has been compared to OCD yet? The analysis in this paper placed ME/CFS outside to psychiatric group.
A quick skim and I don't see any significant over lap with the DecodeME genes:

 
This might be controversial and perhaps not extremely well-substantiated, but some evidence suggests that OCPD is the most overrepresented personality disorder in ME/CFS patients.

Can you say what evidence? I have not heard of that and have not got that impression from anything I have come across so far.

I cannot find anything on PubMed
 
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This might be controversial and perhaps not extremely well-substantiated, but some evidence suggests that OCPD is the most overrepresented personality disorder in ME/CFS patients.
That's interesting because one of the expressions of OCPD is sports addiction and other forms of putting so much strain on the body that you could compare it to torturing the body. Anorexia n. is another expression.

I bet these behaviour health issues can damage the immune system in the long run exactly in the same way as the better known ME triggers like EBV and Covid can.

I am neither a biomedicalist nor a psychdynamist when it comes to psychiatry but an enneagramist. In this theory OCPD corresponds to the unhealthy expression of type 1 personality. And I can add that I have met only one individual with that personaltiy type that has ME.

What's really sticking out is how often people on this platform associate ME/CFS speculatively with severe mental health issues. I find this quite odd because I suffered from chronic depression in the wake of family scapegoat abuse and stuck around with other mental patients in self-help and mindfulness groups for about a decade and I have never ever not met a single person in these groups with ME/CFS as their comorbidity.

Or actually exactly one guy. The guy from above with enneagram type one/OCPD.

Why is this subject so seductive to chat about here for folks in the complete absence of any objective data? I sometimes have the impression that folks here are more interested in psychiatric associations of ME/CFS than in ME/CFS pathomechanism. This is really strange! :cool:
 
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So perhaps this could tie back to what some of you already mentioned in this thread - that there may have been subtle neurological or behavioral differences present long before the formal development of full-blown ME/CFS.
I think the sleep-disordered breathing paradigm provides a good explanation for a lot of this (once again lol).

Sleep apnea is associated with an increased prevalence of many psychiatric disorders; the below is data from the VA (see also population-level data on panic disorder here).

Association of Psychiatric Disorders and Sleep Apnea in a Large Cohort (Sharafkhaneh et al. 2005)
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And this is just sleep apnea (technically they didn't distinguish between obstructive and central sleep apnea here, but central sleep apnea is pretty rare compared to OSA); imagine what it might look like with milder sleep-disordered breathing not meeting OSA criteria factored in -- especially if (some) psychiatric disorders follow a similar pattern to "somatic syndrome" symptoms (and alpha-delta sleep) in sleep-disordered breathing patients (highest prevalence in mild sleep-disordered breathing patients with decreasing prevalence with increasing AHI, perhaps due to the fact that as frequency of apneas increases less time is spent in inspiratory flow limitation [the proposed stressor], though other factors may be relevant like women making up a larger % of mild sleep-disordered breathing patients).

Of note, alpha-delta sleep is associated with major depressive disorder in addition to fibromyalgia and UARS: Prevalence and Correlates of Alpha-Delta Sleep in Major Depressive Disorders (it is also associated with rheumatoid arthritis [1, 2], so it may reflect a general brain state of physiological hyperarousal from some form of sleep-disturbing afferent input -- whether peripheral nociceptive input or the brain's response to inspiratory flow limitation). I do cite multiple case reports of remission from chronic depression with treatment of OSA/UARS though:
And in this case report of remission from fibromyalgia with treatment of OSA (where alpha-delta sleep disappeared along with symptoms); a significant improvement in mental health was noted (supported by dramatic change in PHQ-9 scores), though resolution of depression was never explicitly stated:
Anyways, the below would lend support to the idea that psychiatric pathology may be more prevalent in mild sleep-disordered breathing patients (I agree with @Utsikt that the concept of "personality" is fraught, and particularly flawed here; if you keep reading that thread I discuss how I think there is probably a bidirectional relationship: people with more naturally sensitive nervous systems may be more likely to develop a [worse] stress response to inspiratory flow limitation, and then the chronic nightly stress likely contributes to increased sensitivity, as well as anxiety and depressive symptoms in at least some patients). If you read the preceding posts in the thread I also discuss what I think might be going on with the finding of pre-morbid anxiety/depression being a risk factor for ME/CFS (basically, it could reflect some degree of milder UARS/OSAS stress response [which worsens with a new stressor into ME/CFS], or psychological stress-related anxiety/depression could be a risk factor for triggering the UARS/OSAS stress response -- either or both could be true depending on the case).



So it reads like «UARS: the unifying theory of everything?» (a bit of hyperbole)
Btw @Utsikt this is starting to feel less and less like hyperbole :emoji_sweat_smile:

But anyways, I do think psychiatric disorders are heterogenous, a lot more so than ME/CFS (which presents with a very specific symptom cluster closely overlapping with that of UARS in the literature), so I don't necessarily think that UARS/OSAS is the primary driver of most chronic anxiety/depression/etc., but I think it could be a contributing factor in a large % of cases -- and the primary driver in a significant subset.

ETA: My personal possible prodromal onset experience:
Me. I had all of the above minus actual panic attacks (I've never had a true panic attack as far as I am aware). For about four years before the onset of my ME/CFS I had generalized anxiety, fluctuating DPDR, and episodic depression (though it was never melancholic/anhedonic depression; it seemed more anxiety-related: I would get episodes of intense anxiety accompanied by emotional distress/depression that would last for several days to weeks, often triggered by stressful life events). I used to think all of this was unrelated to my ME/CFS, but I lean towards thinking it's related/a prodromal phase now, especially because if I'm recalling correctly, the cold hands/feet started around the same time for me too. I had an acute (non-infectious) onset to my actual ME/CFS symptoms (rapid onset of fatigue over 1-2 weeks), although I don't remember having PEM at first, only fatigue and unrefreshing sleep (it was possible I had mild PEM and was not aware of it, but I definitely didn't have dramatic crashes early on in my illness).
 
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I feel like many of the young patients that got ME from a Covid infection would say that this is not true for them. Maybe this a difference for the two age peaks? Also just speculating.
As someone who got sick in 2025 at 22, I'd like to share my experience with what I believe to be my onset and prodromal phase.

I don't think I got sick from covid. Frankly, I don't know what infection, if any, got me to develop ME/CFS. I have three ideas: a cold I got near the end of June 2025 (negative rapid covid tests and short duration), an exposure to covid in late May 2025 (multiple negative rapid tests), or a potential mono infection in May and June of 2025 (unlikely; no symptoms other than increased naps/tiredness and a later test showing I have evidence of a past infection with no clue as to when). It's possible the cold was the onset as it's the one with the clearest infection, but it still feels unlikely.

When I first got sick, I thought it was in late August when I had my "first" bout of fatigue. Looking back, I realized I also had two days of fatigue in mid-August. Looking back again, I had a week of fatigue in early July that I thought was heat exhaustion. I now believe it was PEM. It's also the first time I had the horrific burps (thanks FODMAP intolerances).

Things get a little less clear for June and May, but I believe I may have already been sick before my cold.

I only nap when I'm sick. I've been like that since I was a child. In May and June, I was doing an intensive university program. I was frequently napping. I thought maybe I was finally learning how to rest (I've always been too productivity focused). Now, I think I was actually sick with ME/CFS because I sometimes nap after intense exertion.

But then, when did it start? I think I have an insidious onset. Many people have the story of "I got sick with covid/mono/etc. and then never recovered" that I do not relate to. For myself, I consider the start of my ME/CFS to be summer of 2025. I may never know if that's the true start or if it was an infection that triggered it.

One thing that I wonder if it was a prodromal phase is the start of my tension headaches. They started when I was 20 in the summer of 2023. They didn't respond to Advil or Tylenol. They also were accompanied by tiredness that would last for the evening while I had them. Headaches are a part of my PEM symptoms (that thankfully have been alleviated somewhat by CoQ10). The start of my tension headaches was the most troublesome, though they did continue periodically until my ME/CFS started.

I hope my ramblings are interesting to someone. I find this discussion of prodromes really interesting. It's nice to know I'm not the only one without a cut and dry start to their ME/CFS.

I'm going to look more into the two age peaks. I've only heard about it, but it sounds interesting.
 
I only nap when I'm sick. I've been like that since I was a child. In May and June, I was doing an intensive university program. I was frequently napping. I thought maybe I was finally learning how to rest (I've always been too productivity focused). Now, I think I was actually sick with ME/CFS because I sometimes nap after intense exertion.
Same experience here with napping. Remember being offended by the concept of a scheduled nap as a child haha

Also gradual onset like you.
 
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